I am full of anxiety and fear. FULL.
As I feel this baby move around in my belly, I am tempted to think positively… I feel so much commotion, so much life, that I almost remember what it was like, before Avonlea’s diagnosis, to delight in my pregnancy.
And then I think about sitting in that waiting room at Maternal Fetal Medicine long ago. I am transported 23 months into the past…
…back to the moments before we realized we are not exempt from pain and difficulty in growing a family…
…before we knew the emotional and physical gravity that came along with a prenatal diagnosis…
…before we knew how to plan an infant’s funeral…
…before we knew what it was like to sit at a sibling’s funeral…
…back when we thought that sitting in that MFM waiting room would end in an appointment where we could rely statistics to give us the good news we fully expected.
…back when the 75% chance of our baby’s single-artery umbilical cord NOT being a symptom of a chromosomal abnormality made us comforted, confident and eventually… blindsided.
As you read this, I am probably sitting in that waiting room again, envying the nativity of my former self. I am jealous and angry that I will never be that person again.
For every simple, innocent, ignorant person who tells me that, because I have a child with Trisomy13, I am somehow more blessed than they, there is a battle I will have to fight that they will never even have to encounter. And for the majority of my second pregnancy (thus far), that battle has been a fight for joy, and against resentment… A fight that grieves my lost innocence and a lost entitlement to peace.
That first moment, when the doctor looked at the ultrasound screen and told us that something was wrong with our baby, a bright shade of myself was stripped from my soul.
And for this reason that I wait for this ultrasound, anticipating the news I also dread:
“something’s wrong. again.”
But all our early genetic tests came back with good results… healthy results!
True, but the similar early, non-invasive genetic tests came back good/ healthy with Avonlea. Even though 1st-trimester screenings have come a long way (even in the last 2 years since we were pregnant with Avonlea), the results are not as statistically accurate as the invasive tests that bring along a risk of miscarriage… invasive tests that we were not willing to have done.
But the doctors said that neither of us carried a genetic predisposition for Trisomy13, and there are hundreds of families who receive T13 diagnoses for their children and have healthy children in addition!
Also true, but as unlikely as it would be to have another baby with a chromosomal abnormality at this point, I am all too acquainted with the day-to-day reality of being the “unlikely” statistic. I had a baby born alive with Trisomy13 at 25 years old, with no family-history of genetic issues on either my or Brian’s side. My baby had a less than 20% chance of being able to survive outside the womb and after that, less than 10% chance of living past her first birthday. Check, check and check! What the hell are statistics anyway? They certainly don’t seem to apply to us. In may ways, of course, that’s been a good thing, but in this waiting room, it brings me little-to-no comfort.
We have, too often now, been on the receiving end of the failed medical tests and have been in the minority slot of the statistics.
I feel like I cannot trust anything anymore… a feeling which has thrown me into a living state of anxious pessimism.
I ache to be free of it, but my desire for self-preservation wins against my desire to stay hopeful.
I can’t handle being blind-sided again. I cannot spend one more season of life in a state of shock. I have to go into this with absolutely no expectations that can be ripped from my grasp.
Please pray today for this baby: that it is healthy and whole, with all the right number of chromosomes and that we can spend the rest of this pregnancy in a season of relative peace. Please, just pray. I have no strength left to do much more, or ask for much more.